MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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LauraJean's picture
Replies 4
Last reply 7/1/2012 - 1:08am
Replies by: Janner, alicia, Gene_S, Linny

Hi! I am recovering from my second melanoma, this one was in situ (yeah). Still many stitches by my ankle but I'll survive :) . My first was in 2006 on the same leg but on thigh. It was 2.1 mm SNB negative, did a month of Interferon infusion. I love my dermatologist but am wondering if I should find a melanoma specialist? My mother also had several primaries - 3 I think. Not sure what to do at this point, any suggestions? I am in the NY/NJ metro area. Thanks!

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Advocate for your own treatment.. Stage 4 Melanoma NED Surgery,Radiation, Temodar 300Mg July 2009-March 2010, then Thorocotomy...now "Phase I Study of Anti-PD-1 Human Monoclonal Antibody MDX-1106 and Vaccine Therapy"

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susanr's picture
Replies 7
Last reply 6/30/2012 - 6:19pm
Replies by: susanr, Eileen L, WendyPam

Hello everyone.  My Brother is Stage IV. Primary Acral/Foot. 1.5mm Dx. 2/2009.  He just finished two- six week rounds of Temador and three infusions of Abraxane.  Yervoy in 12/2011...seems to not be a responder. Not strong enough for Biochem.  Brain/spine/liver/other G.I organs clear. C kit and braf-negative.

Started this regimen because mult. Pulm and abdominal mets/nodules,. along with mass in left pelvis.  had doctor appt. on Weds. and all is stable post Temodor and Abraxane except the left pelvic wall mass which is now bigger/huge.....wt. loss big but he does have an appetite and eats but not like he use to.  Doctor now started Nexavar and Carbo.  Told many patients have responded to this regimen... but when I research this combo....I am not too happy with results/outcome.  Is anyone on this now or have taken in the past.  I did back track posts on this forum and some have but nothing I have seen recently.  I see most of you on clinical trials/zelboraf/yervoy. Thanks for the help/advice/coments.

Regards to all the fighters. 

SusanR NY

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Mrsgkr's picture
Replies 1
Last reply 6/28/2012 - 8:59pm
Replies by: AllyNTAus

For those that are taking Zelboraf and have skin mets, have you noticed a difference in them? If so, how long did it take before you noticed anything different?

My husband has been on Zelboraf since May 6. He was originally on the full dose of 960 mg twice a day, but due to the severity of the side effects the dosage was reduced to 720 mg twice a day.

So far there hasn't been any change in his skin mets and he hasn't had his first ct scan since starting the Zelboraf. We spoke to his oncologist about it, but all he said is that the mets are the last thing to change.

Thanks,
Valerie

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chuck's picture
Replies 17
Last reply 7/2/2012 - 4:23pm

After a visual inspection on my wife by a dermatologist the doc told her she has skin cancer and can see melanoma. No biopsy was done. We dont know what stage.

 

they scheduled her to see a plastic surgeon on  july 12th for more testing/surgery.

 

according to my wife.....It was a mole that appeared  in 2009 and in 2010 it broke open (no or very little bleeding) and has been that way ever since. She never knew about melanoma so never worried about the mole.  My wife hasnt seen any doctor other than a dentist in 5 years and I convinced her to go and get a check up and that was when the doc noticed it.

 

I don't know what to do next?

What questions to ask the doc and surgeon.

And all of this happened while im out of town 300 miles away for work. And I can't even be with her. she tells me to stay for the 5 days I have left but I think she needs me there for support.

Im lost.

 

Chuck

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Sharona19's picture
Replies 4
Last reply 6/28/2012 - 12:42am

I will see the Oncologist for the first time since diagnosis, WLE with full thinkness skin graft and SLNB of invasive nodular melanoma of the left foot. So far, margins are clear as are the nodes and I want to as aggressive as possible in keeping any recurrence at bay. Can anyone offer suggestions on questions I should ask about a treatment plan? Are there any Stage II folks receiving treatment? I would appreciate any advice or stories from anyone so I can make the best, most informed decision for my treatment.

Thank you in advance for any help.

Sharon

Everything works out in the end, so if it isn't worked out then it's not the end.

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sjl's picture
Replies 5
Last reply 7/26/2012 - 9:12am
Replies by: Anonymous, sjl, Angelica Camargo

Well, I'm new to the group.  I've been searching and reading this board for awhile and decided to seek out some help.  My husband was diagnosed with malignant melanoma of the nasal cavity (mucosal) in April following a biopsy after surgery for what they thought was an inverted papilloma and no big deal.  In May, he had another surgery to remove more of the nasal cavity melanoma as well as several lymph nodes, one of which tested positive.  A nodule also showed on one lung but they originally were just going to keep an eye on it because it is small and is a fairly common finding in the general population.  After bouncing around from place to place, other doctors suspected that it was cancer and a Pet Scan was finally approved.  It showed up as cancer on the scan.  Now, because they don't know if it's a spread of the melanoma or a primary lung cancer, we are waiting for a biopsy (scheduled for next week) to determine the type before having surgery done to remove it.   If it's melanoma, they will remove the nodule only.  If it's primary lung cancer, they will remove the lobe.  They suspect primary non small cell lung cancer.   Meanwhile, a hole opened up through the nostril near the surgical incision and we are headed back to the doctor tomorrow to get that checked.  Radiation is expected, but not until they do the lung surgery, and now not until the nose is taken care of.  Chemo has been mentioned, specifically interferon for a year, subject to change depending on the biopsy results of the lung.  He's been given an 80% chance on the lung cancer alone if it's a primary and if not, a 50% chance overall.  I've asked about Gleevec if the melanoma is cKit positive and about BRAF but the doctors have no answers yet.  Yervay has been mentioned to me by someone as something to look into.  So, here we are, two months post diagnosis, with no treatment plan and time is ticking away.  I understand that they have a lot to figure out and now the hole in the nose just complicates things even more.  I'm tired, frustrated, scared, the whole nine yards.  Trying to keep track of multiple appointments each week across a two hour drive is nearly a full time job, as I'm sure all of you are very much aware of.  I'm trying to handle all of this while holding on to two part time jobs, which I need desperately right now, but I'm sure all of you have your own similar situations so this is not meant to be a whine.  I'll just have to deal with it like everyone else in this boat.  What I'm very much concerned about is the delay in treatment for my husband.  I'm so afraid that this monster will rear up and take charge because we can't get the treatments started.  How do any of you feel about the delay?  I'm waiting for a call back from one of the doctors about my concerns over this but have heard nothing yet.  Anyone on this board with this type of cancer?  It's so rare and the few messages I've found elsewhere are a couple of years old.  Current information is very difficult to find.  I'm grasping at straws trying to find anything encouraging.  Sorry it's such a long post.  I thought I'd give the full story in hopes that someone here may be able to shed some more light on things for me.  it's such a shock. 

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Anonymous's picture
Anonymous
Replies 1
Last reply 6/29/2012 - 1:22am
Replies by: FormerCaregiver

Hi Everyone:

My dad starting taking Zelboraf at the standard dose on March 19, 2012, his Melanoma was quite advanced..  He was a responder to the treatment with tumour reduction in lungs, spleen, spine.  In May he started to get external regrowth on his neck.  Will get the neck growth radiated. Waiting to get his CT scan results back this week.  Speculating that it will likely show tumour growth and regression.

I know lots of people are in the same boat in terms of running into the resistance issue.  Just hoping to hear some ideas in terms of a Plan B of attack.

MRF is the place I keep coming back to for snippets of hope.

Thanks,

Adrian

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http://news.vanderbilt.edu/2012/03/melanoma-drugsecondary-tumors/

In 2011, the FDA approved the drug vemurafenib for the treatment of metastatic melanoma in patients whose tumors harbor the BRAF 600E mutation. While the drug, known commercially as Zelboraf, has nearly doubled survival among patients who respond to treatment, a significant number of those patients develop secondary skin cancers – most commonly squamous-cell carcinomas and keratoacanthomas.

To determine the cause of these secondary cancers, the investigators performed a molecular analysis of patient lesions.

Most of the patients (78 percent) had clinical signs of chronically sun-damaged skin and 17 percent had a history of squamous-cell carcinomas or keratoacanthomas.

Researchers obtained 21 samples of cutaneous squamous-cell carcinoma or keratoacanthoma from 11 patients with metastatic melanoma, and a validation set of 14 samples from 12 patients who had been treated with vemurafenib.

The investigators found that about 60 percent of the tumor specimens harbored mutations in the RAS gene, the most prevalent being HRAS Q61L.

The researchers then used a mouse model to induce HRAS Q61L-mediated skin cancers and found that while vemurafenib did not initiate or promote cancer development, it accelerated growth of existing lesions that harbored HRAS mutations.

Growth of these tumors was blocked when a drug that inhibits the MEK molecular pathway was used.

“This is a prime example of bedside-to-bench research where observations by oncologists can be rapidly studied and elucidated by close collaboration with dermatologists and basic scientists,” said Puzanov.

“This will inform further clinical development of next-in-line BRAF inhibitors, as well as BRAF-targeted drug combinations.”

The authors note that studies in mice suggest these secondary tumors develop from a multi-step process driven by exposure to a chemical carcinogen or ultraviolet light, followed by a tumor-promoting event. This event is an oncogenic driver mutation in RAS, preferentially in HRAS.

“Our study suggests that combining the BRAF inhibitor vemurafenib with a MEK inhibitor drug may be useful in patients who harbor the RAS mutation,” said Puzanov.

Melanoma patients who are being treated with vemurafenib are now monitored closely for the potential development of these secondary skin cancers, which tend to appear soon after treatment begins.

The secondary cancers can be safely removed surgically and patients do not have to stop vemurafenib therapy for their metastatic melanoma.

I'm me, not a statistic. Praying to not be one for years yet.

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Snickers60's picture
Replies 11
Last reply 6/29/2012 - 8:55pm

Are you guys taking it and HOW MUCH ?

 

Thanks

Nancy (devoted wife of 3X Warrior Wayne) 

Matt. 15:13 "Every plant that my Heavenly Father hath not planted shall be pulled up by the roots". "With God all things are possible" ! Keep the FAITH !

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Gene_S's picture
Replies 6
Last reply 6/29/2012 - 6:03am
Replies by: JerryfromFauq, LynnLuc, Anonymous

Live 4 today. Thank God for all he has done for us. Looking forward to enjoying tomorrow.

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MeNDave's picture
Replies 3
Last reply 6/30/2012 - 7:36am

OK, quick update... Dave's meds have increased again since his nerve pain in his hand has come back.  At the same time, he finished his radiation yesterday to his spine, hip, and right axilary tumors (believed to be causing the hand pain).  He is very tired, and despite my being adament that he stay home and rest for his chemo appt tomorrow, he just he went to work. 

My question is this - he has been getting these fevers with the pain.  Last night it spiked at 102.9, and this morning was still 101.7.  His white blood cell count is good, but his hemoglobin is border line for a transfusion (9.4 currently).  His onc does not believe it is due to infection, and considering that other than the hemoglobin count, his bloodwork is excellent.  His liver levels are great.  I have read that sometimes when the tumors become necrotic, they can cause fever.  Of course, if the tumors are growing they can too, but that doesn't seem to be the case (we hope).

I was just wondering if anybody else out there has experienced these.

Best wishes to all,

Maria

Don't ever, EVER, give up!

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Tim--MRF's picture
Replies 3
Last reply 6/27/2012 - 10:11pm

The news reported a few days ago that the the review panel for Britain's National Health Service have said that Zelboraf is too expensive and the long-term benefits are unclear, so they recommend the NHS not cover the drug.  This is devastating news for melanoma patients in Britain, and I believe we need to help reverse this recommendation.  My colleagues in the UK and Europe have asked for our help, and here is what they recommend:

If you are a melanoma patient or the family/friend of a patient in the UK, please submit a comment on this issue.

If you have taken Zelboraf--particularly if you are a long-term responder--please submit a comment even if you don't live in the UK.  Your story can have an impact.  

You can submit comments here:  http://guidance.nice.org.uk/TA/Wave27/5/Consultation/DraftGuidance

My personal feeling on this is driven by a few widely-reported facts:

--clinicians have a biomarker that predicts response

--response rates are high among those patients receiving the drug

--while the median duration of response is 6 to 7 months, those months tend to be characterized by high quality of life

--some patients have much longer responses

This seems like a strong case for approving the drug in the NHS.  

Tim--MRF

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awillett1991's picture
Replies 5
Last reply 6/28/2012 - 6:43am

I feel like the last unicorn being a BRAF V600D but I'm posting this in the hopes it can help someone else. I can't be the only one. Despite there being no data available on its efficacy, Dr Sosman believed that Zelboraf would work on my tumor. I started 4-17 and was on and off for the horrid rash, then joint pain. I also suffer through the other many nasty side effects like so many people. I have been steady on 3 pills 2 times a day for 9 weeks or so. In April I had a cardiac met measuring 24x25mm and yesterday It measured 18x16mm. It's working and we are rejoicing for however long it lasts.

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Iowa98's picture
Replies 3
Last reply 6/28/2012 - 8:21pm
Replies by: NYKaren, LynnLuc

Hello,

With my father coming off of some chemo treatments, he has been using steriods to bolster his energy level.  While not the prescribed usage, it has helped with his energy and overall emotional state.  However, he is now starting IPI / Yervoy and I've read that the use of steriods may impact the effectiveness of the treatment.  Has anyone heard or experienced this?

Thanks, what a journey......

Jessica

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